Susan Senator

Thursday, May 31, 2012

There were times when Nat was growing up where I would become what I call “a little manic.” I used to get this way when I saw sudden lights going on for Nat, that awakening we parents hunger for. I’d see he was getting it, moving to the next level, and I would then flip joyfully into mania. I’d want to sign him up for things. Higher level classroom. Activities for the family previously untried. The sky was the limit.

This was not necessarily bad. This kind of episode of mine would lead to more attempts for Nat at new competencies. Even if things failed, we’d learn something. And hopefully, we’d try again a little later. So there I was, sitting in one session at this conference, and feeling manic; I’m at a conference on disability and transition into adulthood. I’m here on business; I work for CCCAID, The Community College Consortium for Autism and Intellectual Disabilities. That’s right, folks, COLLEGE for guys with involved forms of ASD, and IDs! My consortium is working on extending the mission of community colleges by offering access — higher education, job training, job connections, and even independent living training. There are federal programs, funding streams, that can possibly be leveraged for this purpose, to provide real, useful training for guys like Nat. (See CCCAID.org for details on where these programs already exist.)

The session I attended before just blew my mind. It was on SSI and Medicaid. Not many people would cry after sitting in an SSI workshop at a conference, but there I was, crying into the phone, talking to Ned (I’m in DC). What was I feeling? That scary tingle of hope.

Sometimes I dread hope because with it comes work. I have to some work now if I’m going to follow through with this feeling. But I’m getting ahead of myself. I have to process what I’ve learned.

The main thing I’ve learned is that people like Nat can indeed work, earn money, and NOT lose their Medicaid benefit! BUT they have to follow the rules. There is still the limit of monthly assets never being more than $2000 at any one time. And of course if your paycheck exceeds $698 a month, you can no longer receive that SSI money. But if you have a disability that severely impacts gainful earning, you can still get Medicaid.

There are various Work Incentive Programs that allow people like Nat to use earnings for any work-related expenses. Even job coaching can be considered a work-related expense! So you can submit your work stubs and receipts to show income and service used, and still earn more than the SSI allotment, as long as you stay within the maximum monthly limit. In addition to this, you can figure out how limited you are in earning full-time and deduct that percentage from your income. So if Nat were to work at 50% capacity, I think this means that 50% of his income does not count towards taxable income. I think. My head is spinning with all I’ve learned, and I need to check on all of this. So please don’t just take my words here as any sort of professional gospell. Check for yourself.

I guess what I’m feeling is that because Nat is enjoying his new supermarket job and he’s suddenly earning more than I’ve ever seen on his check (it’s still way under the SSI limit), I have started to wonder if he could start to pay for more job coaching by taking on more hours and thereby stop doing the Day Hab part of his week. If he worked more and earned more, he wouldn’t be penalized because he’d be spending income on more job coaching and remain under the limit.

If he were to start earning so that he made more than $2000 a month, he would lose his $698 a month check, but he could still have Medicaid, as long as he was spending his money on rent, food, and anything related to his special needs. But this means he could have an income that pays for an actual Boston apt rent and he would not need State money anymore!!!!!!!!!!!!!! I do not have enough energy for more exclamation points, but that is what it would take to express how this makes me feel. Nat could get off some of this state ddependence. Oh My God.

If I have this right. I just don’t know if I do, but I have these speakers’ cards and emails, and so I am going to check it out. You can, too. Write to amy.wallish@fullcircledc.com My organization might consider bringing her to an event for CCCAID at North Shore Communiity College in Massachusetts, by the way.

If I can make this happen — and really, it means that Nat would be making this happen — then I just don’t know what. I just don’t know. To me, the sky’s the limit — and yet Nat is still profoundly autistic. Yes he is. Go figure. And remember not to be afraid of hope.

Monday, May 28, 2012

Often, in scrolling through the many autism parenting blogs, I come across the sad wish, “If I could only, just once, hear my child say those words to me: ‘Mommy, I love you.'” I remember that wish. Even now I still have moments not of wanting to hear Nat say he loves me but to know what he is thinking. But for the most part, I no longer feel that raw loss, the grief of having a child who does not give that kind of typical verbal feedback. That is because I learned to read Nat’s own signs of love, connection, interest, and so on.

You know that when you are alone with your non-verbal, very autistic child, that something is there. He may be rocking, eyes closed, stimming, talking apparent gibberish, but you feel something. There is a bond, a connection. Is it one-sided? Deep in your heart, you know that there is something between you and him. But when you go out into public, maybe it’s lost because you are back to seeing him from everyone else’s perspective, as having deficits, rather than difference.

Most parents who are sad about their children being non-verbal and apparently uncommunicative, uninterested in anyone, are trapped in their own worlds. I am not being facetious; I see this (compassionately) as the truth. It is so difficult for us to get out of our own heads, our cultural signals, our learned responses, that we may miss what our autistic children can and are saying. Because they are saying it in their own way.

Autism theory is stacked against us from the start. We enter into the world of autism diagnosis from a negative standpoint, where we are told that something is wrong with our child, that he can’t do this and he can’t do that. He is described in terms of deficits and disability, rather than seen as different.

Maybe some of you will dismiss what I’m saying here as flaky and Disney-like: Listen with your heart kind of stuff. Fair enough. It sounds like that to you, and it did to me. Until I gave myself permission to believe what I sensed about Nat, until I had confidence in my ability to read his signals, his ways — I, too, saw him as cut off from me.

We all do it. We think that autistics have no ability to read emotions in others, that maybe they don’t even care about those emotions. Temple Grandin herself taught herself to understand what others’ emotions looked like on their faces, and how to respond. True. She did not know this stuff implicitly.

But it was there. It just looked and felt like something else to her, until she learned to see and feel it all our neurotypical way. The problem comes when we assume that autistics don’t actually feel emotions simply because they don’t know how to name a feeling, or how to respond to us. They may not know the language of emotion; that doesn’t mean they don’t know emotion, however.

I can’t believe I ever subscribed to the Theory of Mind ideology, as it applies to people on the autism spectrum. Nothing personal against Dr. Simon Baron-Cohen, who long ago enjoyed Making Peace With Autism and blurbed it, but Theory of Mind in terms of autism is some bad shit. Because it fosters hopelessness. Even if it has clinical truth to it — proof that a person with autism cannot have empathy, cannot put themselves in someone else’s place — TOM is one of those theories that asks the wrong question. The question itself — Can an autistic person know another person’s mind, feel another’s perspective — that propels the TOM research, is tainted by the old-fashioned view of autistics. The old, poisonous way of thinking holds that autistics are a monolithic group with all the same limitations and problems, rather than individuals with combinations of challenges articulated differently in each person.

And yet, people on the spectrum are just that: people on the spectrum. Snowflakes and fingerprints, dude. Infinitely different strengths and weaknesses, just like everyone else. Which means that in order to get to know what it is that they know, think, feel, you have to get out of your own mind and try to inhabit theirs. Ironic, isn’t it? Theory of Mind experts measure empathy and theory of mind from their own particular points of view, and judge autistics for not being able to visualize another kind of mind.

If TOM is inherently flawed because it judges other (autistic) minds from its own non-autistic perspective, then it stands to reason that judging mental ability based on ability to speak is also flawed. It is your own shortcomings that prevent you from valuing and understanding other, non-verbal forms of communication. It is the shortcomings of the theorists, not the subjects.

Once we as parents give ourselves permission to believe what we sense, to believe what we feel our child is saying non-verbally, we are well on our way to connection. Once I realized/assumed that it was true that Nat cared about us, about people, and that he understood some/most/all of what was being said around him, my behavior changed towards him. My outlook became confident and hopeful. And either it was that Nat responded to me being this way, or it was that I now could read him better, but the outcome was the same: he does want to communicate, but on his own terms.

Sunday, May 27, 2012

Today I tried a new thing: I asked Nat if he wanted to type a message on Facebook. He said “yes,” and he used my account. When other people wrote him back, I showed him. I had him read their comments. He thought about them for quite some time, and then he would say one word out loud, and I would say, “Type that. Tell them what you are thinking.” He would then type the word, pause, and I would help him again — not giving him content, just keeping him focused. “Tell them what you are doing today.” I would almost whisper it. I didn’t want to make him run away, overwhelmed. He would wait a while, finger hovering over the keys, and then he would say a word, like “Races.” I would ask him what he meant by that and he would explain: “Swim races.” So I would then say, “Type that.” Sometimes he would start a comment with “nat.” Sometimes with just his word. I would always tell him, “Great!” and then ask him if he wanted to say anything else. He always thought for a while, and then he might type something or if he seemed really tuned out and looking around, I would ask him if he was finished. If he said, “yes,” I would hit the return key and show him his entry, and thank him for writing to these people.

This is deeply exciting to me. Nat clearly wants to communicate with people, and you can bet I am going to light a fire under this one to make it happen. I remember when Nat was four or so and wishing desperately that he would understand that it is a good thing to connect to people. I was at such a loss as to how you make someone understand that.

Sometimes you just have to wait. Do everything you can, but also — wait. It’s so hard, but it is better to wait decades for something than to think it will never happen at all. So why not try & wait at the same time?

Friend me on FB (tell me who you are because I don’t friend just anyone who asks) and you will see for yourself.

Thursday, May 24, 2012

Yesterday I mentioned that I want to write a new book, which would almost be Nat’s memoirs of the past few years, as imagined by me. I see the past few years of his as a time of immense growth, and I’m fascinated by it. The things that fascinate/bother/anger/sadden me are the best places to start writing. I am intrigued by Nat’s communication development, and his centered approach to things. I just finished a book that has given me a way possibly to write about this in novel form. A Turn of Mind, by Alice LaPlante, is about a woman with advanced Alzheimer’s, who is accused of murder — and she doesn’t know if she did it. The entire book is from her perspective, her thoughts, which go in and out of clarity, but are always about something. Thus we piece together what happened, and we get to know Jennifer, the main character as well.

This is the way I want to write the book about Nat, which I’m thinking of calling You because that is Nat’s form of first person. Thinking back, I see the change in Nat starting with his 17th summer, when he went off to Extreme Sports Camp in Aspen. This was how the blossoming began. And ironically, this growth occurred during a particularly difficult time with Nat. In fact, things were so tough at home those days that we had begun planning to transition him to the residences at his school. Ben was living in fear of Nat’s outbursts (screaming, jumping hard, hitting). I felt like I couldn’t trust Nat anymore; so many things bothered him. He would ask questions over and over and we would answer over and over and it never seemed to help. His school’s advice was to redirect him, answer only a few times and then tell him we were going to talk about something else. But this frustrated him. He had to hear more of it. Sometimes explaining the things again and again did help him calm down. Other times they seemed to feed the fire. Why?

I don’t know. But Nat went away, first on his amazing week in Colorado without us, and then a year later to the house near his school. The year in between had its hellish parts. More and more of the questions without end, without satisfaction.

Until we figured out that what he was doing was telling us that something was out of whack; a break in a routine, a light not going on, an i not dotted. The repeated questions/statements were not because he didn’t know something but because he didn’t like something. And the answer didn’t satisfy him, didn’t set it right.

Somehow we figured out that we needed to tell him that the thing bothering him was indeed going to be rectified at some point. I started to feel a little bit happy to explain, rather than anxious to quash the question. I felt happy because I saw that it worked; Nat listened to my answers, watched my face, and learned to trust my explanations. It began to be like just about anything I heard him repeating, I would listen to carefully, try to find the decipherable word as my clue, and think-think-think what was it about that thing that could be bothering Nat? Like the time at the supermarket when he kept inserting the word “bag” into his self-talk phrases. We were in the car and I became aware of “bay-ag, bay-ag,” and my mind flipped through the possibilities, and seized upon the cloth bags that I had used instead of plastic. New bags! Wrong routine! Solving puzzles has always been fun for me, and so I kept my fun feeling with me as I explained to him about how it wasn’t good to throw too much stuff away, like bags.

I think that the small happiness I felt, even with anxiety over his outbursts swirling around, was like the eye in the storm, and it transferred itself to Nat. He could probably sense that I had gone from “Argh, stop the questions! But don’t get upset!” to “Hey, I know what you’re asking about! I can explain that to you!”

And the final flourish I added was to say, “Okay, Nat?” when I was through. Something about that check-in also gave him comfort. Was it because he knew I cared what he thought, that he understood? Or was it that it provided a nice bit of closure to our conversation? It doesn’t matter, because it “worked.”

And so I’ve been thinking about starting there, digging deep into events that happened when he was 17, in 2007, and imagine the thoughts in his mind, the feelings colliding with our actions towards him, and where those feelings went, what they morphed into. Then, also, the first moment he felt that I really wanted to help, rather than stop, him. What did that feel like? How did his thoughts look? What did he notice?

This is, of course, going to be a novel, because I can’t ask Nat directly to get the answers, to be his biographer. At least, not yet.

Wednesday, May 23, 2012

I’m at another pause in my days; this usually happens in May and June as things slow towards the hot languid pace of summer. I don’t know what to do with myself, especially given that I’m not often called upon to mother my sons. They are so independent, each in their own way. Rising while I float. I guess I’m reflecting a little, considering where I am and where I want to go. I know that my journey is still a path parallel to my boys, winding around them but still separate.

I’m thinking of writing a new book, which springs from stuff I’ve learned after writing Dirt. In Dirt, the best part of the book was Nick, the teenager based on Nat. I tried to be inside Nick/Nat’s head, I tried to be him in order to make his character real. I wanted a character who had full-blown autism, because as most of my readers know, full-blown autism still means full personality/personhood, and yet so few people realize this. I do, because I’ve lived with Nat since his conception, February 14, 1989. That night, after a Valentine’s Day Thai dinner, and after love, I saw this star burst in my mind, in the dark. That was Nat.

I wouldn’t say he was a mystical child, but I will say that he was my firstborn, and therefore utterly special because before him there were none. Thoughts of his earliest days fill my heart with the most tender pain, which comes from slicing open delicately the flesh of your life to make room for this new one.

The fact of our connection is the mystical thing, the wonder of my life. I want to write about that, but especially I want to write about what happened to Nat himself. I’m thinking that this book will be Nat’s story — it has to be a novel because it is imagined — but it will be born of my connection to Nat, and his words, to whatever degree possible. I haven’t always felt connected to Nat, and I guess that’s because for his first 10 years I was afraid of him. Not constantly, but it perforated my relationship with him, shot it through with holes. I was learning, and learning isn’t easy. So it wasn’t until I had that epiphany that day, when he was 12 and just horrible, and I was tickling him, poking him because he was fake-laughing and being so annoying, that I didn’t know what to do, so I just acted without thinking. No shield of thought going up, no adult analysis; just a natural reaction to an annoying kid you love. That moment, when our eyes met and we were suddenly laughing together at the same fun thing — our play fight — there was another star burst, and I knew that he was mine, really mine. No more fear.

The years they are a-flyin’ and I find I am an Old Mom, and my sons are growing-grown. There is a distance again that I feel with Nat (and Max) as men; Ben as an emerging man. There is just this maleness they exude that gives me pause. It’s funny to think that now although there is distance there is no fear, no sadness. It is just another tender pang that I feel for them as I hang here, and they climb skyward towards their zenith, my three stars.

Monday, May 21, 2012

I’m like the wind blows, back and forth.
Stimming… ahhhh!
I listen to some and they say, let the child stim. It’s who they are, they self sooth, telling them not to is the same as saying there is something wrong with them, and don’t be different.
Some say, if they’re stimming, they can’t be paying attention to school work, peers, things going on around them. Allowing them to stim will keep them from succeeding.
The school allows full stim.
His Autism Specialist says control it.
What do you think?

–Windy

Dear Windy,

First let me say how entertaining I found your email format to be!

Second, let me say how sad it makes me that there is this angst in the world about stimming. I know from deep experience how Nat’s stimming has made me feel over the years, how uncomfortable. But my deeper embarrassment is that I care at all. Nat’s stimming is necessary to his comfort and more; I know that, but being a silly flawed human, I still am not at the point where I feel comfortable when he stims in public. It is not that I am ashamed of him, not at all. It is that it puts me back in that place of loss, where I once realized that Nat was not going to have the life I had dreamed for him. He was not going to have a mainstream, red white and blue kind of life that I could provide and wanted to provide. Of course none of my sons has turned out to be mainstream, steak-loving short-haired males, but neither is their father, and neither is their mother, so to speak. But what my other sons are is not the point here. It feels like they had a choice to be alternative and different; Nat did not. His autism made him different from the start, which is not bad in and of itself, but it does make life harder. Mommies usually do not want their children’s lives to be hard. Our duty is to give them life and to help them survive and carry on. It is genetically programmed into us.

So the stimming brings me right back to the point of shock, where I see how Nat appears to others, and they are so wrong about him, in their silent ridicule or misunderstanding of him. They are so wrong! And yet I can’t do anything about it! I can’t realistically stop them in the street and say, “Wait, no! You don’t know him at all! You think this self-talk is wacky but it means something! He’s not stupid, he’s not someone you can just scrape off your shoe! MY CHILD! Really? You’re going to laugh at MY CHILD??? But he’s so awesome! Wait, look, see how he can smile even if the world is confusing to him? See how he learned to navigate the outdoors safely, despite so many strong impulses? Look, damn you! Look at him. See his deep and real Personhood (you fucking idiot).

Those are the feelings I have when Nat stims in public and they are not easy feelings to have. I would rather not have them. But do I say with painfully clenched teeth: “STOP THAT, NAT!” No, I don’t. The most I have done is to add a new layer of skill to his social repertoire: the ability to be quieter, and/or choose a different time and place for it. Or choose a more socially acceptable stim. In Nat’s case, he can do “quieter silly talk,” (yes, that is what we call it, from a long time ago, and that is how he knows it, and it is too hard at this point to change over to a kinder terminology.) or do silly talk after the supermarket.

Sometimes, though, happily, I just don’t give a shit, and I feel just totally in love with him, and I want to stim right along with him. IN YOUR FACE, WHOLE FOODS UPTIGHT BITCHES!

Sorry. The Swami gets very heated about perceived attacks on her babies. You understand.

On the question of whether allowing them to stim gets in the way of their understanding school lessons, and what goes on around them… well, yes, it probably can do that sometimes. But sometimes it is the other way around. They aren’t understanding what is going on around them and so they stim! If I didn’t understand what was being said all around me, the way I felt in London, for example, I space out, and I focus on the “wrong” things (my shoes, my hair, which I smooth down, fluff out, smooth down, flatten out… sounds a little stimmy, doesn’t it?). I don’t know, but does doing that to myself perhaps reassure me that I’m still here, even though I am so cut off from everyone else around me?

I think the best solution is taking it a stim at a time. When it’s no big deal, it’s no big deal, let it be. When it is a big deal to be more still, you can help your child understand time-and-a-place-for-everything, and that is good for his survival in this bug-eyed world, the demanding schoolroom or workplace. But it has to be done humanely, acknowledging the importance of stimming, something like this, “Oh, sweetie, I know you love to flap, but in this room flapping has to be quieter. You can flap when the bell rings and class is over.” Or “You can flap in ten minutes, let’s set this timer.” Or, as in Nat’s case, we do tell him not to suck his thumb in public, and so he then taps his thumb against his lip, and seems to enjoy that, too. I think it is a sign of caring to help your child figure out acceptable and subtle relief.

I never believe there are black and white answers to these kinds of things. We’re trying to teach our autistic children to discern gray areas and be comfortable with them, because life is about the gray areas. Stimming is neither good nor bad, it just is, but it can be softened without shaming, just to help one fit in a little better.

Love,

Swami

posted at 3:25 pm

Wednesday, May 16, 2012

Do you think Nat’s aggression/anxiety was worse during puberty? Jeremy just turned 13, and although the aggression has subsided, the anxiety and rigidities seem to have escalated. I’m hoping hormones may be playing a part in this, and that later on (sooner than later I hope) things will level out. I think you are going to be very busy with this new endeavor…bless you, Swami!
-Cookie

Dear Cookie,

Thank you for writing. The way I’m going to answer this one is to tell you all the factors that I believe went into Nat’s behavior when he was aggressive. I do this so that you can think in terms of possible reasons for Jeremy’s aggression, to give you a context to work from. You don’t need to compare your situation to mine; just know that you can use your own observation and empathy skills to try to figure out what’s going on. I say empathy so that it will be easier to remember to stay on his side. My biggest mistake was becoming afraid of Nat and being apart from him. When a child is feeling bad enough to hurt others, it is so important to stay with him. I think of this as “being the adult.” It is very hard, because you’re scared: for him and for others (and you). But try to feel for him, and you will stay connected. Connection is definitely a way out of troubled times.

Nat started to become overly energetic when he was 10, shortly after beginning Paxil. This period also coincided with his starting in a classroom that was not appropriate for him. The teacher was a skittish person and the speech and OT people took Nat’s behavior personally. This was the only experience in Nat’s entire school life where he was disliked by staff. And boy, did he know it. Even now rage simmers angrily inside of me when I remember them. I mention this because we parents always try to pinpoint when difficulties began and why, but what do we really know? My gut tells me that Nat’s synapses were becoming too slippery on the Paxil, making him almost a little manic and definitely uninhibited. But combine that with a tough winter and Blue Meanie teachers… why wouldn’t someone start hitting out at them?

But why did he also hit me? I still don’t know. This period lasted on and off for a year or two, until Nat was settled in a new school program where he stayed until he turned 22. During those years under the care of a wonderful humane doctor we started him on a tiny dose of Resperidone to see if it would calm him a little — not sedate, but calm him, give him a split second of space before responding impulsively. That was the theory. The Resperidone did help somewhat, but also I’m sure we were relieved to have something to try and so we calmed down, too, and that was good for Nat to experience. Can a parent fake calm? I would advise it.

We also started Nat in Special Olympics gymnastics at this time, and this was such a positive experience for him that he really started to feel good again. His coach was lovely and the other kids on the team were his age and some became friends of his to this day.

Winter gave way to spring, and this also helped.

Hormones make anyone crazy, be they adolescent boys or middle-age perimenopausal moms. Indeed, people in general tend to straighten out once their bodies do.

Here is another thing that helped, and you must read this without judging the Swami. Nat’s school had an idea which was to use a time-out room for 1 minute to help him decompress when he became aggressive. This way they could avoid restraining him. It was a small room with a small window. I cried when I signed the consent, but I felt that we should try it and see how he responded.The time-outs were fine for him; he could be alone and away from whatever/whoever had set him off. It served as a cool gust of air in a hot room (I think).

Time-out rooms are not legal these days, but I think that Nat benefited from the quiet separate space for those brief intervals. They were not used as punishments; they were used as a distancing device. I think that’s okay. I think it did him good to experience that he could be calm rather than aggressive. Would I do it this way, knowing what I do now? Probably not. Now that I know how much he wants to communicate (but on his terms), I would have worked harder trying to teach him words and typing emails.

As Nat grew, so did his language, and I believe that was the element that had the biggest effect on his peace of mind. He could identify what was bothering and he could see that telling us about it had a positive result. This built trust, which is what may also be at the heart of some of the aggression. I think that when Nat would get so worked up that he would hit someone, it was driven by fear of not being validated. I think he felt alone, needing something but not knowing how to tell us. I think this enraged him, at us and at himself.

What I’m trying to tell you, Cookie, is that yes, I think Jeremy will grow out of it the way we all do, and that also there may be some concrete things to try like Special O, maybe meds (under a good doctor’s care), communication skill-building. I think you should trust your gut and your kid, that it definitely will get better and that you both will have learned a lot at the end of this phase.

Love,

Swami

posted at 8:05 pm

Sunday, May 13, 2012

I have a question I was wondering if you could help me with. How long do I let my daughter live in her own world that involves driving, babysitting, getting married, having children, etc.? She is 11 years old, moderately cognitively impaired, high functioning autism, severe auditory processing disorder and understands about only 50% of very short familiar sentences. She has severe short term memory loss, seizures and a number of other medical issues. Language is lost on her. She tries, bless her heart, but she doesn’t understand what she is hearing most of the time or even what she is saying. She mimicks what she hears other peopele say. In this case, she hears her older sister talking about all these dreams, so of course these must be her dreams too. I hope that one day she will be able to be somewhat independant like your Nat, but I really wonder if that will ever happen because she cannot take care of even the basics without reminding or/and help. I worry constantly of her being taken advantage of in so many ways. I have only had her for nearly 3 years as I adopted her and her sister from foster care. She is beginning to come to a knowledge of some sort that she is different from other kids. But I am wondering how long to let her have these dreams that are not possible. She will never drive, or babysit, or have children…at least not unless she is taken advantage of or has sex and that is the outcome, but she will never be able to care for a child. She will always be a child herself mentally. When do I ease her into these truths or do I allow her to live in her dreams and face these things headlong as they come? I hate it when she says something about a variety of things I know she will never be capable of doing because it feels like I am lying to her to go along with whatever her chatter is in that area. It is weird because she has such a hard time communicating her needs and wants, but she can mimick these things so well and believes them. Does that make sense? Just wondering if you have any insight. Thanks in advance. –Gabriella

Dear Gabriella-

I can see how painful this is for you. I understand your questions. I also relate to how scared you are for her, and how black & white you are seeing things. So let me start there. She’s only 11. You would not believe how difficult things were with Nat at 11! So much growth occurred in his later teens and early 20’s! Although I don’t know your daughter, I do know that our delayed kids can and do continue growing after puberty (growing intellectually and socially, that is). It might be because they have experienced more of the world, and they understand it better, and so they are more in command of themselves and their communication. So you should try not to think in terms of “she will never…” because you don’t know. For instance, even if she will “never” babysit, it may be possible for her to go with some peer and help babysit. It might be possible for her to just be in the room with you and a relative’s baby, and let her do a few helpful things that you can call “babysitting.” It is not a lie; it is a creative form of getting her what she needs. As far as driving — well, that in itself is not such a big deal. Plenty of people don’t or can’t drive. That is something she can deal with when she’s older; you don’t have to address it now. Let her talk, let her fantasize, like any other 11 year old. Some of them think they’ll be ballerinas (I did, but I was a plump kid, so that was never to be!)!!! And this applies to having children… remember, a lot of little girls have their dreams, and who knows what true adulthood will bring? Keep in mind she’s just a little girl. She has limitations but she does not need to know about them in this way. If you were asking me how to tell her she can’t cross the street by herself, I would say tell her now! Help her now! But something like daydreams — let that be for now. Let her enjoy her thoughts, her confidence in herself. Her confidence and joy in life will probably actually help her succeed more later on. Attitude helps a lot. My mom thought I was crazy to want to be a writer… it only encouraged me more! Our kids always surprise us, please believe me. Finally, I want to address her mimicking ability: also a good thing, a skill! That may help her someday in articulation, in being understood, and in turn understanding people!

Also, I still have to repeat that you never know how she will grow. Even if she needs assistance in dressing or something, that doesn’t mean she won’t be independent in other ways. Do you think that Nat is really so independent? It’s all in the way I look at him. I feel proud over every small accomplishment, like when he can make himself understood at Starbucks… but that doesn’t mean he is independent in a restaurant! But we have to be happy wherever we can be.

Also, don’t feel that she will “always be a child mentally.” She will be a teen and then a grown woman and you don’t know how she will be perceiving the world. Our kids may seem childlike but they are very much whole people. Nat seems “babyish” at times but he is a man, and he needs me to remember that and respect it. Don’t worry. All this will come to you in time. For now, try to enjoy her fantasy world, like any other little girl, help her achieve the things she can, be creative! There are no rules here, no definites. Just trying our best day by day.

Saturday, May 12, 2012

We are backing away from years of ABA, and now working more on recreation and ADL skills in-home with Jack (who is 10). We are “staffed” for a significant amount of time — 25 hours a week.

We have him working on things like emptying the dishwasher, carrying laundry baskets, feeding the dog, etc. Do you have any other ideas? How about for hygiene or recreation skills (he has none — not even interested in computers)? Do you have anything you can draw on from your experience setting up Nat in a house, etc.?

— Catherine the Great Mom

Dear Catherine the Great Mom –

If I understand you correctly, you are asking how to come up with more things for Jack to do at home, how to go to the next level (beyond ABA-structured, engineered activities to more real-life, organic activities). Purposeful pursuits like ADL’s and self-care regimens, gainful activities for time at home. I remember when we were always trying to come up with activities for Nat while he was home, some sort of meaningful or useful things for him to do (and learn about) that would also give him the schedules and structure he craves. It used to drive me crazy that I did not know what he could be doing during supposedly fun times. What did “fun” mean to someone who could not tell me what he liked because he always answered “yes” by default?

First thing I had to learn was to switch around how I thought of him and his likes. Eliminate “he does not like…” from my vocabulary. Think in terms of what he does with his own time to understand what he does like, and build from that.

The idea was to take his natural activities and stretch them outward to other activities. Watch him and then think what I could add on, rather than think in terms of lists of stuff I want him to do and know.

This meant that I had to ask him what he likes in a different way from my usual front-and-center demands. I had to watch him almost peripherally, to see what it was that he gravitated towards, what he did frequently when demands were not in the picture. This way I could go from something he liked to do naturally and expand it into something that uses that as a base but adds in more. If he walked back-and-forth a lot as his preferred activity, I had to think without judgement, “What else can he do while walking back-and-forth?” Lawn-mowing, vacuuming came to mind. Lawn-mowing with a rotary blade, an old dull push mower (no motor) is a safe way to have him work purposefully outdoors and walk a lot. Pick up one at Home Depot or even at a yard sale. He can mow any which way, and you can just clean it up afterwards. Even if you have a tractor mower, leave a patch uncut for him. Walk with him at first to make sure he can handle it safely and phase yourself out, of course. This was what I did.

Or you can build on a current skill. You have him feeding the dog. What naturally comes next? Are there other things he can do with the dog, like put his leash on, and take a small walk around the lawn with him? He will think he is walking the dog and actually, he is. He’s just doing it on your terms. Does he like lists? You can make lists for him that he can check to be sure he is doing the task and more. What are the steps to walking the dog? Think like him: 1) Go to peg for leash. 2) Click leash onto collar. 3) Take dog to corner of lawn near Mrs. So-and-so’s house. This is so that he’ll feel organized and so that he’ll enjoy it because a list is involved.

You asked about hygiene. What are the struggle points? What are the easy parts? You always have to find the low-hanging fruit, do the easiest stuff first and go from there. That is the stretching point, your point of entry. So if he willingly showers but refuses to wash well, what would make sense to him in terms of getting him washing? A laminated visual reminder stuck on the tiles in the shower? A Disney song about scrubbing? In our case, Nat used way too much shampoo. The way the house stopped that was to pour out a nice amount into a dixie cup. And remind him that it goes on his head, not down the drain. Get him used to the right amounts.

Now, let’s talk about “recreation skills.” Are we talking what’s fun for mainstream people or what’s fun for your son? I’m a believer in starting with the kid and going from there. My two neurotypical boys hate sports, recreation to them is laptop fun. How do I get them outside, then? The same approach goes for your autistic son. My autistic son loves sports. But we had to learn that by taking him to Special Olympics to see what it was he really liked. He likes the back-and-forth of swimming, the defined task of each kind of stroke. In basketball, again, it is the back-and-forth up the court, the way teams take turns (your team shoots, then it is our turn). He also likes the cheering and noise in a gym, it turns out. (Take that, all you stereotyping types who say “Autistic people do not like loud sounds and chaos.”)

See, all the things he already does — and it sounds like he does a lot! — can be stretched further to encompass more and lead to other things. He can pick up twigs from the lawn. He can use the wheelbarrow. But quantify these things if he needs definition. He can learn to dust his room (with gloves on). He can measure the detergent in the machine, and from there learn to measure for baking. Anything can be recreational but it’s a matter of thinking like him, not Everyone Else.

Love,

Swami Mommy

For now, even though comments are delighted in and appreciated at this blog, the Swami is not sure about publishing them on the Swami forum. Please don’t be offended to see no comments here. Commenting will still be available on other blog posts that are not letters to the Swami!

If, however, you feel that your comments are actually questions and concerns that can be addressed by the Swami, let her know by emailing autism.mommy.swami@susansenator.com

Love, Swami

posted at 7:21 am

Wednesday, May 9, 2012

While raising our kids to be able to advocate for themselves, we also need to still advocate for them. That job never ends. In my case, Nat is currently not communicative enough to tell us specifically what he needs in terms of housing, so I have had to use my best judgement.

I don’t think parents realize their own power. I don’t mean power in terms of beating or besting someone; I am talking about the ability to make things happen — the power to fulfill certain dreams. Many of us give up, to one degree or another. But the thing is, we should not. So many of you come to me with open terror about autism adulthood. While there is reason to be proactive, there is also opportunity to stop and think about what you and your adult child want, and to keep that vision at the front of your mind.

Why is it working so far, in Nat’s house? Staff? Location? Roommates? All of these and one more: the parents are active in making their opinions known. We are not afraid to speak up at the family meetings –once a month, with staff and house manager — and give our input. Our service provider (the organization we chose, licensed by the state, who hires and administers staff, budget, etc.) is open to our ideas and they have organized the house according to our wishes — within reason. If one parent wants to choose or even veto roommates, he cannot. The ultimate placement decisions lie with the state that is providing the funding. Traditionally the state has not wanted to support these parent-input person-centered-planning ventures because they feel that parents get too hot under the collar. They feel it is liable to fall apart. While they are right to be concerned and cautious when giving parents a say, the Department of Developmental Services should also remember that their own state-run homes fall apart, or people withdraw, too.

Parents in our situation only let everyone how they feel, but they cannot expect to get their way, necessarily. Still, the service provider is obligated to factor everything in.

The house manager and service provider staff do listen to us when we talk about how we all want young men who are active and interested in socializing. Being verbal is not required; rather, it is the social willingness we are looking for. We also want them to be the same basic level of autism and ability, but of course with their own differences, so that they are comfortable with each other but could also learn from one another. We did not want mixed disabilities, mixed ages, or mixed genders. We were thinking about what we would like when living with roommates, or what is typical of guys that age (in their 20’s). I mention this because sometimes it is an interesting set of possibilities when you mix disabilities, ages, etc. A person with CP, for instance, would bring with him staff for physical care, which gives the house an additional staff person(sometimes). But to us, the abilities would be so divergent it would not make sense.

Our service provider heard us and the young men are well matched. This does not mean there have not been any incidents our outbursts; that goes with the territory of these three young men. But the staff have kept them safe and continue to take them out into the world to do food shopping, runs in the park, trips into Boston, the beach… All the things I wanted for Nat’s from the beginning.

And for once in my life, there have been very few surprises. The parents planned so much with the service provider and each other, that when the guys moved in it felt good, even though there was almost no furniture or food!

Successful adulthood housing arrangements are about putting your thoughts down on paper, fearlessly. Talking to people who have been there. Learning the funding steams and what is available, what you can afford. Don’t be hampered by worry. Keep writing down your questions and you will stay focused and when you come across an expert you can ask. But just as you’ve done for your kid when he was growing up; you push your agenda — politely and tactfully — and you don’t accept answers that feel wrong.

Please contact your US Rep! It is easy when you use the capwiz application. This is not about handouts. This is about a leg up!House to Vote on Bill that will Cut Billions from Disability-Related Programs

Tell Your Representative to VOTE NO on the House Budget Reconciliation bill.

The House Budget Reconciliation bill is expected to reach the floor of the House of Representatives on Thursday, May 10. Programs for low-income people – children, families, seniors, and people with disabilities – would be hit hard by cuts in the bill.

Your help is needed to educate your Representative about the need for a balanced approach to deficit reduction.

Some examples of cuts in the bill that will weaken programs serving people with disabilities and other low-income populations:
The Medicaid program would be cut by $28 billion over 10 years through changes in provider taxes, hospital payments, maintenance of effort (MOE) requirements, and payments to territories. People with disabilities are likely to face decreased Medicaid eligibility and benefits as the states adjust to the reduced federal participation.
The Social Services Block Grant (SSBG) that funds special services for people with disabilities will be repealed.
People receiving food stamps (SNAP) will see their monthly assistance reduced; 2 million people will be denied SNAP help altogether.
Please call your Representative and urge him/her to vote “NO” on the reconciliation bill.

What to Say:
Please vote against the House Budget Reconciliation bill.
Deficit reduction cannot be achieved solely through more spending cuts for programs that serve people with disabilities and other low income populations.
Revenues must be part of the equation.

Use the Arc’s Capwiz tool to send an email — easily! Save food stamps and other supports.

Saturday, May 5, 2012

Every now and then Nat tells us he would like to send an email — well, we ask him if he wants to and usually he says no. But today he wanted to. This was after we had a conversation about his new job, which is at a supermarket near his day program. Nat told us that he “used the computer” (and indeed, the job coach trained Nat in safety skills on the computer) and also that he put the carts “in the right order.” We asked him where he put the carts and he said, “in the cart,” which is also accurate; they get shoved one into the other, as we all know. (The reason I comment on accuracy is that in the past Nat has had default answers that he gives when he wants to get us off his back and stop talking to him. So often he would answer correctly but untruthfully. But when he is in the mood to communicate, he struggles to find the precise word he wants and you can depend on this being a recap of exactly what happened for him. When he opens up to us like this, it takes my breath away — but never my words. I store it away and then I have to tell the world, write it on thy doorposts and upon thine gates, that this is a real person, with an entire inner life, and just a different way of living it or talking about it. That fact is of Biblical importance to me.)

Back to the conversation itself. He has also told us that Sean is his job coach. And Holly is his house manager. You will see in his email that each line is a separate paragraph, about a different topic!

The cool thing is that the whole conversation began with Ned asking Nat what was going on, and Nat replied, “Not much.” He is really learning how to converse the way we do, down to the silly small talk. (Chit chat is the true silly talk, not the self-talking Nat does, which actually has meaning!) But I think maybe emailing works for him because it is in a clear context: you are writing to someone, not simply for the sake of writing (after all, who in their right mind would write just for the sake of writing? Oh, yeah, never mind…)

And here is the email, which also talks about what he did today — he went to the swim qualifiers for the Special Olympic State Games which will happen in June. He won gold medals in all three of his events. He told us “lunch schedule,” and by that he meant, we should stick to the schedule and give him lunch after swimming. It’s all there in the email. Read it for yourself, and see how much you can glean about Nat’s life these days.

Thursday, May 3, 2012

Nat came home and had a snack, after his snack Nat joined N for a 45min walk around the area. Upon their arrival at the house, Nat came with N, D, and me to the grocery store to pick up some dinner ingredients for the remainder of the week…— Very Abridged Notes from the caregiver, 5/2/12

I often think about how I learned to connect with Nat. There were three components: observation, education, and projection. First — all his life — I would observe him, plunge deeply into my interactions with him just to gain a comprehensive knowledge of his ways. When he was a baby, I would do what any mother does — sit on the floor with him, gather him onto my lap, talk to him, read, sing to him — and watch and learn. We all get to know our babies and kids, whether we know it or not. They’re utterly familiar strangers, no matter how their neurology flows.

Over the years I have educated myself about people in general and autism specifically. The best thing I ever did I think was first to watch Amanda Bagg’s video In My Language, for the biggest brain explosion of my life. There Amanda — non-verbal and autistic — typed out what she thinks about her perception of things and why she stims, what she gets out of it, what things look and feel like to her. Why we have no right or even justification to impose neurotypical mores on her. I remember she says something about how beautiful running water is to her, something like that, and she kind of pities the NTs for not being able to feel that same fascination. After that, because of Internet communities, I was able to befriend certain adult autistics and ask questions about what does this or that feel like, what do you think about this, what should I do about that. And I also went to a few ASAN meetings where I listened to the conversations of autistic adults, and got a sense of what it’s like to perceive differently and more importantly, to be perceived as less than other people. That was and is my education in being autistic, all so that I could consider new things about Nat.

Projection, however, is neither intuitive nor cerebral. By projection, I mean imagining and hoping based on what I feel. I feel something when I’m around Nat, and who knows where the feeling comes from — could be him, could be me, could be both — and I make an assumption about its meaning. Because of the wide range of possibilities, however, projection is the most difficult aspect to get right. Where do my feelings end and yours begin? This can be hard to determine for some of us.

I have said before that depression is a part of my life experience, as is mood swinging in general. So sometimes I wonder if the sad feelings I had during Nat’s babyhood were about my own depression, or about realizing that there was “something wrong” with my baby. The nebulous borders of emotion are tricky and treacherous, but they can also be joyous. For the times that I have felt closeness to Nat, the times where I suddenly “get” him and he gets me — can there be anything better, in a mother’s life?

So just now as I was walking downstairs after waking up Ben for school, I found myself thinking happily about that particular routine, Ben’s, where I get up at 6, make coffee and his lunch, and then wander upstairs at 6:45 to get him up. He and I both know there will be several more wakings before he shuffles into the shower. It’s almost a game. And after I walk back downstairs, I feel happy for no particular reason, eager about the new day. It was this that made me think of Nat, and his day. Last night I’d read those shift notes from his caregiver, and saw all that he does, and this morning I wondered if he was happy with that. I felt a pang inside, worried. What if he isn’t happy, and no one knows it? That same old irritating sharp fear, like a tendonitis in my heart. But then, wonderfully, I remembered something: I’m the one with depression, not him. I’m the one who has trouble with certain boring routines, and other times I absolutely adore them.

Why should I assume that anything I experience is the way Nat does? Just as projection once aided me in connecting with Nat, in realizing back then that he is just a boy and not a puzzle or monster, it may also be getting in the way of my letting him go. He’s separate, different from me, grown up, and apparently happy.

Tuesday, May 1, 2012

Night after night we are watching Game of Thrones, Season I. (I say “Season I” because I have not yet seen Season II so do NOT spoil it for me!) The character and situations of Tyrion fascinates me, in terms of his disability. Tyrion Lannister, played by the outstanding Peter Dinklage, is a dwarf born to a wealthy and powerful family. He is well-educated, well-dressed, and highly sophisticated in his outlook on life and his self-expression. He is not trained in weaponry, but he is very brave. If he heard me say he was “very brave,” however, he would probably slice me up with sharp sarcasm. You don’t patronize this guy. People learn this quickly with Tyrion. When one character asks him why he reads so much, Tyrion replies, “Look at me,” and points out the obvious: that he is a dwarf that no one would care about or respect or fall in love with. But he tells the other guy that he loves living and therefore does what he can to enjoy himself. He blatantly pays for his love and sex, he bribes his way out of any diffficult situation; he even gets another character to fight as his proxy in a duel to the death.

There is much to admire in Tyrion. Probably the best thing about him is his outre character, his unabashed participation in everything around him. He doesn’t shrink from the public, even though people call him “Dwarf,” and “Half Man,” and worse. His skin is like rock; nothing like that bothers him. He knows who he is and the attitudes of others toward him mean nothing. Tyrion is a great example of inclusiveness — the family treats him almost like an equal, but not really, though even this is more than I’d expect from people living in a Medieval-like era. They don’t lock him away, or kick him out on the streets to beg for his food. The way he is just a hair beneath them (no pun intended) makes sense because these are not supposed to be modern times. What I love the best about the portrayal of Tyrion is that people’s treatment of him does not stop him from getting what he wants and living a fun life (such as it is in such a brutal culture and era). He never corrects people or asks for Person-First language. It got me thinking about how much more sensitive our society is to the use of words and the need to accommodate — which is very much the way it should be — however there is something stunningly admirable to see a character like Tyrion fighting everything and everyone just for his dignity. No one loves him like an equal; and yet more than once Tyrion says how much he loves life. Watching and listening to him, it is easy to see that this is true.

To go out in public with such an obvious difference from everyone else — this just takes my breath away. If you read this blog you know that I have always had a problem with going out in public with Nat, though less so these days, because of the way people stare at him when he does his self-talking. The anger and sadness I feel when I see that is like an iron ring around my neck. But if I could be like Tyrion, and just focus on the love of life and my dear son, nothing else would matter.